Archive for September 2010

Spectrummy Mummy thought I did a decent job with my last post, and didn’t scare off too many of her readers, so she said I could do it again. I thought I’d do one on something we can all understand: Pressure.

You see, all parents have pressure that they deal with in bringing up their kids. Are they eating enough? Are they sleeping enough? Are they wearing warm enough clothing? Why are they sniffling so much? And should that be that color green? These are things all parents think about, and worry about, constantly. The pressure of knowing you have the life of a helpless child in your hands. Honestly, we threw a birthday party for Pudding when she turned one not only to celebrate her birth, but to celebrate that she was healthy and we hadn’t done anything too stupid yet. Then, the pressure gets greater. Are they walking on time? Have they started speaking on time? Is it appropriate language? Should they be playing properly with other kids by now? How soon should they know their numbers, letters, shapes and colors? It’s all so terribly hard. And it just keeps getting harder when they start school.

Now Spectrummy Daddy, I know there is a point somewhere in this diatribe. Can you skip to the end? Sure thing. If you’re reading this, you’re probably feeling this pressure, and much more. Being the parent of a special needs child (whether on the autism spectrum or other special needs) is always going to be filled with more pressure. You see, we have so much more we have to deal with, and naturally that pressure is going to build up inside. What if we can’t afford all of the proper treatments that my child needs? What if money starts to be a problem? Am I doing enough for my child and my family? And then if you go out to dinner with the family, what happens if there is a melt-down? What do we need to do to keep the kids occupied? That’s something that Spectrummy Mummy and I deal with when we go out with Pudding and Cubby all the time. We also realize how easy we have it. Pressure of this kind can break you, and it can wear you down. I’ve seen it with the best of them, and I know it’s happened to me.

Remember, kind reader, that you need some time for you. Don’t feel guilty about leaving the kids with the sitter so that you can get out. If you’re married, go on a date with your spouse. See a movie, and get out of the house once in a while. Everyone needs to re-charge their batteries, and you’re no exception. Hopefully you’ll be a bit happier, and a little more healthy as well.

One last thing on pressure. It’s not always a bad thing. Pressure changes coal to diamonds. Pressure cookers allow food to be prepared faster. “Pressure Drop” by The Specials and “Under Pressure” by Queen are great songs. Pressure from a hug helps to calm my little Pudding sometimes, and pressure is what helps us make advances in understanding autism, how it works, and how we can better prepare our children for the world outside without losing what makes them unique.

This was taken on Memorial Day this year, the day Spectrummy Daddy returned from his first trip to Afghanistan. She missed him more than she is able to express, and clung on to his hand all day long. He leaves again in a week for Kabul (a mercifully short trip), fingers crossed it goes easily for her (and therefore the rest of us). Thinking of all the military and government workers who have to leave their families for much longer, especially those with special needs children, whose worlds are rocked so much.

I was thinking that if you asked me what my mood was at the moment- downbeat funk is the way to describe it. Then I realized I like that expression, and it would be a great name for a band, if I had inherited my dad’s musical talent. It is that kind of low, where even if someone does something nice for me, I somehow manage to turn it around, and become a killjoy. There really isn’t much hope, until the holding pattern that our lives are in right now allows us to move on. I tell you though, we are strapped in and ready to take off.

One of my bloggy friends nominated my blog to receive this award:

That was really nice of her. I love reading her blog, she is smart and witty and it gives me insight into the mysterious workings of the Aspie brain. I’m then supposed to nominate 7 other blogs I read, and then tell you in my blog 7 things about myself. Now I’m stuck, because I’m in a downbeat funk and I just don’t feel like playing! If I don’t though, I’ll 1) hurt people’s feelings and 2) violate a blogging convention. The thought of doing either of those puts me in a worse mood. Everybody else followed suit, and I’m left like the odd one out, maintaining internet silence, and wondering once again why I sometimes refuse to cooperate? So I suppose I should just play along. Shouldn’t I? It would certainly consume less energy than what I’m about to write.

I don’t mean to be such a misery, I feel the same way about those email forward things, or those things on Facebook that command action of me. You know, those “you’re-a-true-friend-now-send-this-back-to-me-and-20-other-friends-or-I’ll-think-you-don’t-care” type of things. I NEVER do those. Not ever. You could be my very best friend, or someone I haven’t seen in almost 20 years, or never met at all, and my reaction is the same. There must be a lot of people who think I don’t care, but the reverse is true. I get excited to hear from somebody, only to discover it is a generic forward. Am I the only one? Can’t you just send me a personal message? Can’t I tell you that I like you in my way, and not be obliged to do it on your terms? There are ones where I’m dictated to click “like” if I love my mother, or husband, or kids. It makes me want to scream! If the only way my family know that I love them is through clicking a “like” button, I’m doing something seriously wrong. We used to have chain letters when I was a child, and I never did those either. Now with the internet, these things have gone viral, and I refuse to participate. I will do things on my own terms or not at all! If I had more time and energy, I’d mount a campaign against these things, they enrage me so very much.

Wow, the rage. Of course, this isn’t really about the blogging award. This is about going through a period of time where lots of things are out of my control, and my little blog, my sanctuary, is where I get to have things on my terms. So, I’ll tell you this:

I don’t read many other blogs than the ones on my blogroll, which I do need to update to reflect a couple of the newer ones I’ve started to read lately. Those are the blogs I recommend, I refuse to say if I like some more than others, as on different days they touch me in different ways. So I won’t give you 7 blogs to read, just read my blogroll if you choose to do so. Or don’t, I won’t make you!

I also won’t tell you 7 things about myself here. In fact, this misanthropic post probably reveals more about me than 7 factoids could tell you.

I also won’t give anyone else this award, or forward an email, or make you click “like” on something.

I will comment on your blog if I like what you wrote. I will add you to my blogroll (sooner or later) if I like your work.

I will also try really, really hard to get out of my downbeat funk, so that I can respond with the grace that a thoughtful gesture deserves, but I’m not making any promises at the moment.

Before we knew about such things as special interests, Pudding had a special interest. Her name was Upsy-Daisy. Anyone who has been to England in the last few years is familiar with Upsy-Daisy and the other protagonists from “In the Night Garden” a TV show by the creators of The Teletubbies. I don’t know why it never crossed the Atlantic, but back in England with the under-five set it is hugely popular.

Here is a dilemma for you: when trying to teach new experiences, do you use the strengths to your advantage, or put in extra effort to mitigate the weaknesses?

I know you, smart reader, you’d say it would depend on what you were trying to teach. See, I know you now. Okay. Pudding will be 4 in December. At this age, she is not expected to be able to read. The “average child” (does anybody know one?) is expected to know the alphabet, know that letters make sounds, and letters together make words. She can do all of that, albeit in her own way (I think one day Pudding will record a cover version of Sinatra’s “My Way“- that is how she lives).

Pudding has an advantage with some pre-reading skills, I believe due to her autism. Some call these “splinter skills” but I hate that term as it doesn’t recognize them for the superpowers I know them to be. Instead, I call them spectrummy skills. She has an amazing memory, and she is a visual learner, finding it easy to see patterns. As a result, without trying, she has learned a few words just by seeing them often. Words like her name, “hot”, “up”, “stop”, you get the idea. One method for learning how to read is by using “Dolch” words, also known as sight words. The idea being that the child would memorize a set of the most frequently occurring words in the English language, enabling him or her to read by rote.

One of the sensory difficulties that Pudding has is dysfunction with auditory processing. As far as we can tell, her brain doesn’t seem to filter out extraneous sounds, and all the background noise that I can filter out comes at her all at once. Her defense against this assault is to tune out. This is why I frequently fail to get her attention just by using my voice, and sometimes I have to touch her to make her listen. When sounds do reach her ear, they seem to be garbled. Her brain has to decode the strange sounds and turn them into words, which is why it takes her some time to respond, especially in a noisy environment. That is why I implore you to give Pudding and others like her ample time to process your words.

Many children learn to read by associating sounds with letters, and groups of letters, and putting them together. C-a-t spells cat. Here Pudding is at a distinct disadvantage. So many of the sounds are so similar to her ear that a phonic approach is problematic. This is how the majority of children learn to read in schools though. A thorough understanding of phonics enables a child to read several words they’ve never encountered before, incrementally raising their vocabulary every time they read a new book.

So here is the thing. Do I opt for the sight word approach which will come more naturally to her, or do I begin the phonics approach, because I know it will be more difficult, and require more practice? Do I work with her strengths, or against her weaknesses? I’m thinking of this, because the following is a conversation she and I had this morning:

We were at the local playground on Sunday, and Pudding was singing songs and having fun. Spectrummy Daddy remarked that Pudding was back. The anxiety that seemed to have claimed residence for over at year is at bay, and it feels like the carefree girl we used to know is back with us. I took this shot of her, and the cheeky smile and the glint in her eye reminds me of my Pudding before the move, the anxiety, and the autism spectrum diagnosis. I hope she sticks around, because there is a little more upheaval on the horizon for her.